US confronts a frightening Alzheimer's epidemic. By 2030 one in four Americans in the 65 plus age group will have Alzheimer's disease.
At the moment the figure stands at one in eight, according to the Alzheimer's Association's 2008 Facts and Figures Report.
The average course of Alzheimer's disease is eight years, but some can have it for 20 years. Those with the early onset form of the disease -- people in their 30s, 40s, and 50s -- tend to decline rapidly, becoming ravaged in a few years. Others, who are older, may already be suffering from ailments like diabetes and heart disease when they receive the diagnosis of Alzheimer's. In these cases, Alzheimer's slowly drones on in the background of the other disorders, until its "side effects" -- the polite term for brain damage -- become so pronounced that the disease takes center stage. Because Alzheimer's takes such a varied and prolonged path, and is often a co-occurring condition, it's hard to parse medical statistics to isolate the costs of Alzheimer's alone.
There are any number of variations too - vascular dementia, caused by imperceptible strokes; Lewy Body dementia, the symptoms of which are a hybrid of Parkinson's and Alzheimer's; and Frontotemporal dementia, which destroys logical reasoning long before it attacks memory, leaving its sufferers especially prone to scam artists, the kind who promise they'll marry you as soon as you change your will.
Alzheimer's demands gentleness from others. The disorder, most of the time, is terribly boring and frustrating, for patient and caregiver alike. It's slow, and cruel, and inexorable. And there's no cure, and no certain evidence that the current medications -- Aricept, Exelon, Razadyne and Namenda -- which are said to slow the course of the disease, really work. Recent studies pitting Aricept, in combination with vitamin E, against a placebo have had disappointing results.
The costs, financial and emotional, of treating and caring for an Alzheimer's patient are astronomical. Today, the amount of time lost to American businesses by workers being forced to become caregivers of those with Alzheimer's is estimated at 8.4 billion hours a year. The monetary value of this unpaid labor -- often taking place in the caregiver's home -- varies by state, from the lowest, Alaska, at a little above $100,000 a year, to the highest, California, at about $10 billion.
For most families, the stress of coping with the disease in real time is compounded by the terror of budgeting for the future. Because patients with Alzheimer's can be ill for a long time and can require elaborate care in skilled and nursing home facilities, health insurance companies are loathe to cover individuals with the disease. Translation -- if your mom, like mine, didn't have long-term health insurance before she received her diagnosis, you can forget it, writes Rebecca Hyman in Alternet.
You can get nailed by home owner's insurance, too, if you decide to move your parent into your home before you put theirs on the market. If the company discovers that your parent's house is vacant, they can cancel the policy.
"It's crucial that families get a professional diagnosis of Alzheimer's disease as soon as they suspect their loved one may be suffering from dementia," urges Jane Tilly, the Alzheimer's Association's director of quality care advocacy. "The sooner a person receives a diagnosis, the more time he has to make important decisions about the rest of his life, when he is still able to do so. Whom will he choose to serve as his proxy when he can no longer make decisions about the kind of medical care he requires? Who will take care of his finances? And as the disease progresses, will he choose palliative care or heroic measures to preserve his life?"
What's worse, to tell your mother that she has Alzheimer's, knowing that you will have to do it, again and again, causing her tremendous grief and surprise, or to lie to her face, when she asks you what's wrong?
Those who love a person with Alzheimer's are caught in a state of perpetual hesitation: How can we grieve, when the person is sitting there before us, calmly drinking a cup of tea? There are no easy answers.
Right now, a number of prestigious medical institutes are investigating the "Amyloid Hypothesis," a theory that damage to the brain's nerve cells in Alzheimer's is, in part, an effect of a malfunction in the processing of a protein fragment called beta-amyloid. Dr. Constantine Lyketsos, chairman of Johns Hopkins Bayview Medical Center's Department of Psychiatry, and his team of researchers are working to understand the pathology of Alzheimer's disease by tracing the location and aggregation of beta-amyloid plaques in the brain. "By using magnetic resonance imaging (MRI) to scan the brain of a person who has been injected with a temporarily radioactive stain," he explains, "we can create a map of the disease and, in time, begin to trace the various ways in which the diseases progresses in different patients' brains."
Lyketsos hopes that in the near future medical institutes will create an infrastructure similar to that of contemporary cancer research, with research labs and treatment centers in the same building, allowing for greater cross-pollination between research scientists and clinicians. "We want Congress to recognize the necessity of increasing our research funding now, before the wave of new patients is upon us," Lyketsos says, "but we just haven't reached the tipping point yet."